Nephrotic syndrome

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I've come off steroids and am having all over pain and painful joints.Has anyone else felt this way and what did you do about it

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  • Posted

    Dear Nonita,

                        Could identify with those symptoms. But I had the same feelings......on steriods. I was on 80mgs a day. I'm down to 2mgs now. I just assume they are weaning me off very slowly. 

    I'd never heard of 'Nephrotic syndrome' until it hit me. Hope I never have to experience that again.

                                     Regards,  Eric

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  • Posted

    Yes I did it does get better but it takes a while off 7 months and still get pain in joints and my legs and hands are worse had a injection in my hand to held the pain  
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  • Posted

    Dear Nonita & Shivak,

                                         I've been off Steroids  for about 1 year or more. Steroids do have awful side effects. But just do exactly as the doctor advices. I don't see any other course of treatment is going to help. No one knows what causes Nephrotic Syndrome but if this treatment helps, and it may take many years, why not stick with it? In my case I was ill (really ill) for two years. It wasn't easy but I just stuck with it. And when I reduced the dose (Second time: - failed first time) I reduced really slowly, down as low as .25 of one gram, One quarter of a 1gram pill.  Regards and good luck to all. E x

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  • Posted

    See your G.P. (I'm assuming you live in UK) Many of the GP's I see, have never heard of Nephrotic Syndrome. No one knows how this condition develops and there may be many causes?

    Or better still, ask to see the Nephrologist and ask their advice.

    On this site many people advise drinking lots of water. I don't know that is good. When I was in hospital I was on limited intake of (1 Litre per day) . But don't do anything without the medical advice of a Nephrologist. First time I came off Steroids I relapsed. (I too had all the symptoms you descibe and torn muscles) Second time; I tapered the dose down very carefully, making sure I took those pills every day. I've bought my own test strips and do a test every week without fail, it is always negative ! Thank God. 

                                            Regards, E

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